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But you don’t LOOK sick…

I never thought anyone would actually say this to me. I have hypoglycemia and when blood sugar crashes, it hits quick. This includes confusion and passing out. I might not be coherent enough to realize what’s happening and to ask for help before I’m out. What happens if I pass out at work and no one knows I have low blood sugar? For this reason, I always tell my boss about my condition just in case.

While explaining this to my new boss when I first started working here five years ago, he said to me “but you don’t look sick.” I was stunned and didn’t know what to say. “Well, yes, because my blood sugar is fine right now… but should my sugar get too low…” and I explained what could happen and what to tell to the paramedics. He stared at me with this skeptical look and said “I don’t understand. Are you asking for time off?”

I can’t even begin to tell you how frustrated this situation made me feel. On top of that, my confidence in his ability to ensure my safety was severely damaged. I told him, “Look, all I’m trying to do is inform you of my condition and if the worst happens, tell the EMT’s that I have hypoglycemia.” I wrote it down on a post-it note and then went back to work feeling pretty shitty.

The thing is, “invisible illnesses” aren’t really all that invisible. Sure, we don’t look sick all the time, but it’s chronic, so the symptoms present consistently. You can actually see the effects of chronic illness. When my blood sugar gets low, I turn pale in the face, I sweat, I shake, I act oddly because I can’t think straight and get confused. Then I pass out. How is all this “invisible”? Furthermore, just because you look “fine”, it doesn’t mean you FEEL fine.

Even when talking about the Menorrhagia, which most days it’s been a growing fatigue and nausea, it’s treated like an “invisible illness”. Because it’s chronic, I’m used to being tired and used to the nausea and cramping. I don’t want to spend my days miserable and whining. I smile and I say I’m fine, because I can’t go every day with a pessimistic attitude. I have to cope with chronic illness, not dwell in it.

So I look normal. I’m smiling and I’m in a good mood. However, if you followed me throughout my day and really paid attention, you’d see all the symptoms. I pause in the middle of a sentence and exhale slowly to curb the nausea. I “burp” and cover my mouth, holding back the vomit, and after a moment of composure I apologize and laugh it off. Co-workers might see me sigh and lean back in my chair exasperated and think I might be frustrated with work, when really it’s the overwhelming nausea that I’m keeping at bay.

I don’t like talking about my nausea because people harp on this notion that I’m pregnant, when I’m not, but they disagree. I haven’t been able to have sex in the past six months, thanks to this chronic condition, and I get a pregnancy tests with every damned doctor/hospital visit… so no, I’m not fucking pregnant and yes we’re sexually frustrated. When I talk about my nausea, I get cranky and I’d rather not be cranky all the time. So I don’t talk about it, but it’s there, and it’s not as invisible as you think it is.

I sit down and rub my side because I’m cramping. I groan at my desk, but coworkers assume work stuff is making me angry, when really it’s a groan of pain. My pain isn’t invisible, it’s just masked by assumption. I go to the bathroom frequently to change out tampons and pads. I have extra clothing at work… hmm I could have sworn you were wearing longer black pants this morning? I don’t want to talk about it because it’s embarrassing. In my mind, people will think I’m wetting myself, but I’m not.

I don’t like talking about Menorrhagia because people who don’t understand treat me like I’m over-reacting to a normal period. It’s just cramps, all girls have cramps. Yes, but do all girls have cramps and bleeding for six months straight? Do all girls have the same level of pain? This isn’t a normal period and it’s not as invisible as one might think. No one wants to see the blood, but it’s there if you really need to SEE the illness. I had an ovary removed, do you need an x-ray?

Even my anxiety disorder gets skepticism, because I sure am an extrovert. When people think of anxiety disorders, they picture introverts who don’t socialize, don’t like crowds, don’t like public speaking, and don’t try anything exciting or new. I’m sure that person exists but anxiety effects different people in different ways. Anxiety is a condition that affects me, not defines who I am. Most people tell me that they “didn’t notice” when I tell them I have an anxiety disorder. Honestly, that makes me feel proud, because I’m obviously handling and hiding the anxiety well.

I was bouncing my knee, biting my nails, and swaying nonstop. This isn’t hyperactivity, it’s anxiety. I procrastinate going to the doctor not because I’m lazy, because the anxiety is holding me back. Sure, I get on a roller coaster and have a blast, but at the same time, I experience anxiety, wanting to back out, but I know it’s my anxiety and I convince myself to do it… but it’s a personal struggle all wrapped up in my head that you don’t get to witness. Despite my effort to not let my anxiety rule my life, it does often affect me, I do struggle with it every day, and it’s symptoms are there if you really look.

Invisible Illness refers to being sick but not looking sick. People who don’t understand, simply just don’t want to see it. They either assume what they are seeing is something else, don’t want to actually see the proof, or just don’t care. Doctors can see the illness with their array of tests, medical equipment, and knowledge, but no one is going to carry around medical papers and a doctor’s note to show every asshole who can’t see that you are sick.